“I’m Tired.”

“I’m just tired.”

When people ask you what’s wrong, that’s what you say.

You say I’m tired.

Like you just didn’t get enough sleep last night. Like maybe if you get a couple extra hours tonight, or rest up this weekend, you’ll be better on Monday.

But deep down, deep beneath all the fake smiles and the jokes you make to lighten the mood, you know that’s not it.

You might be tired, yes, but you know sleep won’t fix it.

Because it’s life you’re tired of. You’re tired of getting lost in your own head, of drowning in the thoughts and self doubts that pester you every second of every day, while you fight to keep your head above the tides.

Those same tides that threaten to wash away the makeup you carefully paint on every day so you look more like a person and less like a hollow shell of who you used to be.

Can’t they see that what you’re really tired of is pretending? How do they not notice that your porcelain smile is chipping more every day, your body armor has dents in it, your face paint is running, and the rivers in your eyes are bursting the dams you so carefully construct so as not to drown everyone around you.

So when they ask you, “Are you OK?” you just say “I’m tired.” Because you believe it’s the only way to keep them safe as you self-destruct on the inside, the only way to protect them from the disaster that is you. You believe you have to lie so the ones you love don’t look too close.

But you’re so, so tired.

And that’s OK. If there’s anything I’ve learned, it’s that it’s OK to be tired sometimes. “Normal,” even. And you don’t always have to have a reason. Because sometimes just keeping it together is exhausting.

When you feel like this, it’s important to know you’re not alone. You are not the only one who feels this way.

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“I’m Tired.”

To You, the Self Doubter.

To you, the mum sitting in the waiting room of your child’s doctor’s office. You’re waiting on your child’s latest test results. You’ve done this a hundred times before, but your stomach is still in knots. Your hands are fidgety. This never gets easier. You’re scared and you feel alone. Your eyes scan the room as you admire the other mums who are calm, reading books to their children. You suddenly feel guilty. I should be reading, too, you scold yourself. Then it happens. The nurse at the door calls your name. It’s your turn. You panic because you’re not ready to hear the news. You swallow the lump in your throat and walk through the door. You begin to wonder what’s wrong with you. 

To you, who feels brave enough to take your child for a walk in the park or maybe even to a local play area, only to feel overwhelming anxiety about all of the able children around you with all of their able parents watching wondering why you’re signing to your child, why your child isn’t running around and playing, wondering why you’re single handedly trying to manoeuvre each of your lanky almost-4 year olds limbs into a baby swing while pretending to have a good time when really all you want is to run.

Time and time again, we question ourselves and struggle with our own decisions, and carry the weight of the consequences. We’re constantly criticizing ourselves. Is there something wrong with you because you worry endlessly? No, it’s because you love them. Are you abnormal because you feel isolated, tired and scared? No, you feel all of that, and no one blames you. 

So here’s to you, the mum who deserves a thousand praises for loving and fighting for their child endlessly.

To you, the mum whose fears never shadow their courage to try.

To you, the mum who’s doing everything right and doesn’t even know it.

You’re not alone — I see you, I am you. 

To You, the Self Doubter.

A Heart Full of Love.

You miss the things I haven’t done,
the goals not scored, or races won.
The steps my feet have never walked,
the words my lips have never talked.
In my wide eyes you know my fear.
You take my hand and hold me near.
In children, all around you see, the child that I may never be.
Not so able, tough or agile, often tired and much more fragile.
You see the tears I’ve often cried, and cried them with me, side by side.
Your heart is heavy for my trials, but you wear it well,
with weathered smiles.
I know that you know, I am enough.
But I know the bad days can be tough.
You thank the world for giving me to you,
but you’re sad for all I cannot do,
and not because you feel let down my me,
but you can’t help wonder how I’d be.
If I could do what others do,
like ride a bike or run to you.
You think of all the things I’ll miss
first dance, first love,
first date, first kiss.
Yet here I am, as I should be,
not missing out on being me.
Do not fret or worry so
and make your spirit tired with woe.
And when those nights are feeling longer,
lean on me until you’re stronger.
Hold my little hand in yours,
peacefully we’ll pass the hours.
For all we have is one another,
special child and care worn mother.
Nothing matters more you see,
than seeing all the life in me.
I don’t need to be able to,
do the things that others do.
See the words I do not say,
in the smiles I give you everyday.
When I’m tired let me rest,
with my little head against your chest
and for that moment in that peace,
let your loving worries cease.
Look at what I can achieve,
and celebrate me, do not grieve.
Please do not be sad because,
I’m not the child I never was.
Different isn’t less you know,
and you’re the one who told me so.
And somedays will be hard to take.
And you’ll feel as though your heart might break.
But we’ll bounce back,
we always do.
Because you’ve got me and I’ve got you ❤️

A Heart Full of Love.

A Crocodile Full Of Hope.

 

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Aubrees never shown emotional attachment to a toy before, she shows preference when playing she’ll choose what she wants but she’s never got the emotional side of wanting a toy to cuddle, if she had something that didn’t make a noise or light up she wasn’t interested!
Until this little crocodile came on the scene. We went to a Wildlife Park a little while ago and we always buy a little something from the gift shop whenever we go somewhere like that, and we always try to let her choose. Well everything there was too little and fiddly or fragile or was a stuffed animal that did nothing, so we thought we’ll just grab something and that’ll be our momento for that trip. I was looking at the Ty toys and picked up an owl and a crocodile, both of which we’d seen that day, and offered both to Aubree so she could choose. Now normally at this point she’ll show mild interest and then swiftly lose it preferring to nose at what other people are doing. She deliberately reached for the Croc and had a good feel of the material (with lesser seen fine motor skills woohoo!) and would not let him go, so of course we bought him.

Since then he’s been everywhere with us, to town, to the vets with our cat, supermarket shopping, Physio, hospital, he was even there when she had her surgery and MRI in April. She’s grown so attached to him words can’t even explain how happy that makes me, I’ve never seen her cuddle anything like this, and it might sound ridiculous but to make a connection like that takes some level of cognition and it’s just so wonderful to see. His name is Pippin and he’s here to stay 😊

A Crocodile Full Of Hope.

What I Wish I Could Say, On Bad Days.

I’m not okay.

I wish I could say this. I want to so many times. When asked how I am. Instead my knee jerk response is “Yeah you?”And then I immediately segue into talking about you. Asking how you are. What you have been up to. Steering as far away from the subject of me as I can get. Because I don’t want to ruin a good conversation, because I don’t want to make it awkward, because I don’t want talking to me to be a burden. Because I want everyone to believe I am the strong invincible woman I pretend to be. Because I don’t want to seem weak and needy. Because I don’t want to cry. Because I don’t want to dwell on the awful fog that shrouds my brain making everything 50 times harder and much more exhausting. Because I think if I can convince myself it’s a good day, then the fog will blow away.

You see I can be fine, truly fine then it’s just like a switch goes off and all of a sudden I’m not fine, I’m not okay, I’m left with darkness in my mind that is all consuming. I forget how to smile, how to laugh, how to feel anything except the emptiness. I can’t connect with anyone on bad days, it’s like a fast rushing river runs between me and everybody else and even though I really do try, I just can’t cross it. Sometimes I become so engulfed in the brain fog that I completely shut down, stare blankly at something for much too long and won’t speak all day, I do the barest amounts I have to, I won’t shower, I won’t eat, or I’ll eat too much. Light seems too bright, sounds are too loud and the fatigue is hell. This exhaustion is not something simply resolved by sleeping, it’s soul deep. I seem lazy, the house is a mess I’m a mess I’ve done nothing all day because I’m just so tired, so severely overwhelmed with everything that even the smallest tasks seem like mountains.

Depression is cruel, there are no fevers, no rashes, no blood tests. Just the slow erosion of self, as insidious as cancer. And like cancer, it is essentially a solitary experience. A room in hell with only your name on the door.  I have been doing better recently, tablets are helping, I answer more honestly now if I’m not okay, it’s hard and shameful but cathartic. Bad days are few and far between, but always lurking on the periphery.

I am okay, and sometimes I’m not, but that’s okay to.

I must also have a dark side if I am to be whole.’ – Carl Jung.

What I Wish I Could Say, On Bad Days.

D (iagnosis) – Day.

 

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For the best part of 2 years we were lead to believe Aubree had Cerebral Palsy, for the best part of 2 years we grieved and grew and learnt everything we possibly could about CP. This picture was taken 1st April 2016 after my 3 year old went through her first surgery and second MRI on her brain, April fools huh? Several weeks later her neurologist offered us an appointment at the drop of a hat saying he needed to see us ASAP. So of course the alarm bells start to ring, what could be so different with these results that he needs to see us straight away?  We know her brain is damaged, what more could they possibly find?

As it happens it’s not what they found, rather what she lacked. He explained that you have 2 types of matter in your brain, Grey and White. The Grey is your actual brain cells and the White is the bits that connect all of your cells together, think of them as wires. Wires need insulation to conduct a current properly, the ‘insulation’ in your brain is called Myelin. Aubree has absolutely no White matter in her brain, she has no insulation, therefore her wires can’t conduct sufficient signals, hence her motor disorder.

This condition is called Pelizaeus (pel-ee-zay-us) Merzbacher (merz-back-er) Disease. It is an astonishingly rare progressive disorder of the central nervous system affecting co-ordination, motor abilities, and intellectual function. It is named after 2 German physicians who noted the presentation of the disease. There are less than 1000 cases worldwide. As it’s progressive our neurologist explained that she will learn limited skills until she reached 7/8 years old, then she will rapidly lose them. Alongside this she also has Global Developmental Delay, Seizure Disorder, Gastro-oesophagul Reflux Disease, Optic Nerve Hypoplasia and Postural Kyphosis.

So it feels once again like we’re in an ocean of uncertainty with this strange new diagnosis that no one has ever heard of, trying to stay afloat. Just when we thought we knew everything about her it ends up being something else entirely, all of a sudden everything is different yet nothing has changed. I don’t know what the future will bring, and that is really hard to live with. All I know is Aubree is the brightest, bravest soul and we are truly blessed to be the ones to raise her, and if she can fight through each day then we can to. Come what may, my beautiful girl.

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D (iagnosis) – Day.

You.

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By letting go of the things I wished you could do and be, I made room for seeing you as you are, and you are perfect beyond the meaning of the word. You’re funny and so happy, I wish everyone could look at you and see what I see instead of your limitations, instead of thinking “poor little girl”. I see your brilliance which cannot be dimmed by a brain that doesn’t function the way it was intended to. I see your determination, your frustration, your joy, your love. You make me proud every day, I hope you know that. I hope you know how special you are, how important, because there is no me without you.💟

You.